Posted 11/14/2011 1:32 AM (GMT -7)
Hi Emerald, I hope that you do get some responses here that help you. I know that 'hang in there' sounds like something of a flip response - but I do know what all over body pain feels like and I mean it in the kindest way - things CAN improve so try your darnedest to keep fighting.
How old were you when your pain started? I was 14, but I didn't get a diagnosis until I was 20. Before then I was accused of being an hysterical teenager, a hypochondriac, was even offered a psychiatric referral by my surgeon.
What is your diagnosis? My long term diagnosis is full-body Complex Regional Pain Syndrome (aka Reflex Sympathetic Dystrophy), and it's become complicated by severe dystonia and contractures affecting both my lower legs and feet. I've got a whole host of secondary problems too - the way I walk when I don't use my wheelchair has created a massive bursa in my left foot that becomes inflamed quite often. My CRPS also triggered severe gastroparesis that is exacerbated by my use of opiates to help manage my pain and also causes orthostatic hypotension. As a result of both the CRPS and the GP, I've got osteoporosis. My OH causes me to faint, which with the osteoporosis means that I now have compression fractures in my spine at T4-T8 and T10-T12 and radiculopathy affecting my chest and legs. To top it off I've also got Carpal Tunnel Syndrome.
What medications are you taking? Oxycontin/Endone, Topamax, Mobic, Cipramil, Midodrine, Lorazepam, Ondansetron, Magnesium, Vitamin D, Intrathecal Pump (Baclofen/Bupivacaine)...also have a Spinal Cord Stimulator
Do they help? Yes, but not enough.
What non- medical coping skills work to bring your pain down? I have a variety of different methods - from my heating pad and Deep Heat gel (depending on whether I'm lying down or moving about), to Mindfulness meditation, to drawing and my Teddy Bear making, listening to music. I also have an iPad and play a lot of word games - especially Scrabble - anything to keep my mind working and away from the pain.
What's your favorite season? Spring Why? Even though the pressure changes are terrible for my pain, I love the raw wild beauty of a late Spring thunderstorm, and this time of year we get them rolling through several times a week.
Favorite color? Russet
If you could travel anywhere in the world for free, where would you go? Central and Northern Australia - I've been once, and it's one of the most magical places I've ever been. Would love to go back.
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome, osteoporosis, osteopenia.
On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have SCS, intrathecal pump with baclofen & bupivacaine and doing physio